I am 24 years old, in a happy relationship, working at a part time internship, searching for full time jobs, passionate about the environment, have an adorable pet hedgehog named Falafel, have a Master’s degree in Environmental Law and Policy, and I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS).

I’m really bad at talking about it. Most of the people who know me know that I get migraines. Only people I’m very close to or went to high school with know about POTS. I should be telling people to raise awareness about this syndrome, but I haven’t quite figured it out yet. I was diagnosed with POTS when I was 16. Eight years and I still don’t know how to talk about it.

POTS is a syndrome that is caused by disfunction of the autonomic nervous system. (It’s a type of dysautonomia). The autonomic nervous system controls and regulates all unconscious (or automatic) functions of the body. (Autonomic=Automatic. Easy to remember right?) Things like blood vessel dilation and contraction, heart rate, sweating, pupil dilation, digestion- all that good stuff that you never actively think about or control.

Autonomic Nervous System

The basic problem in people with POTS is that we can’t tolerate standing. When a normal person stands, the blood vessels in their extremities (arms and legs) contract to counteract gravity. Their heart rate might increase temporarily, but it stabilizes. When a person with POTS stands, the blood vessels in their extremities do not contract. Their heart rate has to increase to make up for the blood pooling caused by gravity. In some (but not all) POTS patients (including myself) this is accompanied by a drop in blood pressure.

This is just the basic diagnostic criteria for POTS. The other weird autonomic nervous system issues are also symptoms- things like difficulty regulating body temperature, trouble with digestion, dizziness, headaches, and fatigue (to name a few on a long and varying list). Read more about POTS on the Dysautonomia International website.

Why isn’t it socially acceptable to wear ice packs on your forehead in public? I would also like to point out to my sister that there is now an additional photo of her in my apartment (see yellow frame) so maybe she will stop complaining.

POTS is an invisible illness. This means that you wouldn’t know anything is wrong with me based on how I look. I am a rather pale person and I always have dark circles under my eyes, but a stranger might just assume I am slightly sleep-deprived. No one would ever expect someone who looks healthy to have many of the issues I have.

I remember reading in a medical report about POTS patients that every time we stand, it is comparable to expending the amount of energy a normal person does when they are running in place. Now imagine that as you are going about your daily life running in place all day. Think about how tired you would be after the most basic of activities, like showering, cleaning your home, and cooking.

The best analogy I have ever found is called the Spoon Theory. The spoon theory is actually about a person with Lupus, but it applies to people with POTS. Go take a few minutes and read it.

You’re back! What did you think? It’s pretty brilliant. All the best explanations are simple.

I don’t intend for this blog to be only about POTS. It’s just what I felt like writing about today, because I’ve been going through a tough time these past few weeks. Living with POTS, some days are worse than others. Sometimes I will feel great for a day and terrible the next day. Weather has a little to do with it, stress affects it, but it is often unpredictable.

So, I hope you learned a little something today. In future posts, I plan to write about all different kinds of things that interest me. I am a huge fan of pinterest. I’ve been making my own hair and cleaning products for the past year or so. I love organizing. I hope you enjoy reading about all the different things that I think are worth sharing. Until later!

Comments

My good friend and fellow LFC student, Alyssa Conway, also has POTS. It was the first time I ever heard of it. I am surprised to hear you have it and glad you are spreading awareness! Go you!! Cool blog!

Thank you for sharing your story. I found some similarities between the symptoms you listed (dark under eye circles, dizziness, trouble regulating body temperature, headaches, low blood pressure, fatigue) and what I experience. I’ve was diagnosed with Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Degenerative Disc Disease (DDD), but some of my symptoms don’t fit into any one of my diagnoses so I’m going to research POTS a bit more and talk with my doctor about it.

I really like the spoon theory because it explains, fairly clearly, what those of us with a (or a few) chronic illness go through each and every day. You don’t just jump out of bed and run to the bathroom. I literally have to get up more than an hour (15 – 30 min on good days) before I need to get in the shower because it can take me that long to wake my mind and body. I’m not sure the spoon theory really explains very well how much our condition(s) can vary from one day to the next. I don’t know how many times someone has said to me, “But you could do it last week, why can’t you do it now?”, and I have to explain to them that some days I can walk for an hour, maybe even two, and other days I can barely walk for 10 minutes at a time. How do you explain that to someone so they understand? Anyone other than my family (and even some of my family members) and they look at me like I’m lying. I don’t have a lot of friends because people aren’t nearly as understanding as I need them to be because I have to cancel plans at the last minute sometimes because I’m just not feeling up to it. I’m very happy to have such a wonderful and supportive family. I feel for those who don’t have either.
Thanks again!

Thank you so much for writing this, as well as for your “things to say” and “not to say” to people with a chronic illness posts. I can share these with friends and family in the hope that they might better understand and see that I’m not crazy or the only person experiencing the symptoms under the POTS umbrella. I am also glad (and yet not glad, for obvious reasons) to find someone with similar symptoms as me openly talking about them.

Hey! I have POTs too. I was wondering how the fatigue affects you. I’ve been anaemic twice but having iron doesn’t make much of a difference. The last time I started getting an episode of severe fatigue, I got checked but I didn’t have anaemia. I’m getting another test of anaemia after I slept for about 15 hours straight, two hours before I even went to bed and was tired the next day. The doctor thinks I’m not anaemic though.
I’m wondering if my POTs is affecting me more than I realise and causing my fatigue. I’m so tired and I’m pale with bags under my eyes – I actually do look ill! I have one good day but have to recover the day after, I feel like an old lady.
I’ve just had work (I don’t do many hours), only four calls from 4:30 – 6pm and they’re easy ones. I started feeling tired after my second call, like I immediately needed to have a nap and I got a headache. It’s just not normal. I’ve had a week off (which killed me as I was celebrating my 21st) and today I was relaxing all morning, yet a tiny shift knackered me out! I have three days free (tomorrow’s cancelled!) and I’m so glad because I literally will sleep and relax. I don’t do the normal things that you’d expect of a 21 year old.
Does this sound familiar to you?

Yes! I have to lie down several times during the day and I need anywhere between 8-12 hours of sleep. I’ve heard it described that because of high heart rates whenever someone with POTS is standing it is the same as if they are running in place- so it’s no wonder that we are tired all the time! I’m not anemic- my nervous system just doesn’t quite know what to do with itself :) I definitely don’t keep up with others in my age group, but at this point I’ve accepted it and I’m used to it. I’ve tried different meds and lifestyle changes to increase energy but it continues to be one of my worst symptoms. I think it’s pretty typical with POTS. You should check out the facebook group called POTS- I’ve learned a lot from talking to different people there and hearing about their symptoms.

Thanks for the article! I found you by following links left in other articles. This particular post is striking a chord with me. I have always hated standing, and upon exercising would get a bounding pulse. I just did an experiment. Sitting down working on the computer, my resting heart rate was 62. I stood up, waited a few moments, and then just while standing my heart rate jumped to 87. I think I’ll be getting this checked out. Thanks!

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